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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

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Lisa, thanks for the info! I had my ob/gyn apt today and asked the doctor to order the following:

Complete Metabolic Profile

Complete Blood Count

Vitamins A, B (B1, B2, B6, B12), D, E, K

Ferritin/iron

Magnesium

Folate

Potassium

Calcium

Zinc

Copper (I couldn't get this one, because they didn't have the proper storage equipment required to send it off to the lab, but I thought if they were able to do all the rest, it wasn't so bad )

Thyroid (TSH, Free T3 and Free T4)

Inflammation Markers CRP, SED and RF

I was happy that the doctor had no problem ordering all of these for me, and I will report back with the results when I find out!

out of all those tests, the only one my ob/gyn doctor said was abnormal was low Vitamin D, and I've been told to supplement with 2000 iu a day, and then get it checked again in three months. the results are also being sent to my GI for next week's appointment, but I don't have a hard copy yet. Hoping they show up in my Labcorp online account soon!

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

even "normal" results can be helpful to have. for instance I was on the border of deficient in every nutrient that I tested in the "normal" range for decades -- now that we have figured most of my puzzle out and I am absorbing nutrients -- all the low or low end of normal results are in the high normal ranges

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

My results showed up in my Labcorp account this morning! I already knew about the low vitamin D, but turns out I have a few other low and high results. Any input would be greatly appreciated

So the standouts are low Vitamin D, K, potassium and high neutrophils. geez that took me a long time to write-up

Wow...very close to my blood at dx -- I had a few more borderline lows, but in general about the same. The good news when I compare yours to mine is your liver has great numbers. It is common for us to have elevated liver enzymes as the body is working overtime trying to clean things out.

Good Thyroid numbers -- did they run Free T3 or Thyroid Antibodies? Can't remember if that was on your list.

Are you supplementing B12? Nice strong number there.

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Wow...very close to my blood at dx -- I had a few more borderline lows, but in general about the same. The good news when I compare yours to mine is your liver has great numbers. It is common for us to have elevated liver enzymes as the body is working overtime trying to clean things out.

Good Thyroid numbers -- did they run Free T3 or Thyroid Antibodies? Can't remember if that was on your list.

Are you supplementing B12? Nice strong number there.

Free T3 was requested, but it wasn't included, however the thyroid antibodies were not requested. I was going to wait to see what the GI says about things on my follow-up on Thursday. I did have TSH and T4 tested last year, so here's a comparison:

April 2012 Results

TSH 2.490 with ref range of .450-4.5

T4, Free 1.09 with ref range .82-1.77

February 2013 Results

TSH 1.330 with ref range of .450-4.500

T4, Free 1.15 with ref range .82-1.77

Am I correct in thinking that a lower TSH means moving away from the hypo end of the spectrum towards hyper?

The only thing I can think of is the B12 already included in my multi-vitamin, but I'm not taking any extra supplements for that. Is it absorbed in a different part of the intestine than D and K?

Since seeing I'm deficient in Vitamin D and K, and researching them...I thought random bruising was from low iron, and bone pain and muscle spasms from low calcium...turns out I was wrong I can rationalize the Vitamin D to winter time in the northeast, but there is no reason I should be deficient in Vitamin K since I eat salads and leafy greens all the time

For my GI follow-up on Thursday, here's what I'm thinking:

-let the doctor tell me what he thinks...he is the one with the degree after all

-ask him if he will run the celiac panel again to see if there are any changes in numbers, and ask him to order the gene tests. I ate gluten the entire week and at every meal before my initial appointment, but before that week I would eat it sporadically throughout the week but would have considered myself gluten light. Since my initial appointment, I've been eating gluten at most meals.

-due to low Vitamin D and K and the link to bone mineral density, would it be out of the question to mention something about a bone scan?

-he had already said that if my initial tests turned up nothing, he would order an endoscopy and colonoscopy, but how many samples should I ask him to take for the biopsy?

I'm glad to hear my liver numbers look good because to be honest there was a lot on that report I didn't understand

I'm learning lots of new things each day!

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

That is great that your TSH improved -- you are not moving towards Hyper -- close to "1" is recommended as the best TSH.

Not sure about B12 -- just know it is good that it isn't low.

Bone scan is a great idea -- my celiac doc ordered for me when freshly diagnosed...haven't had a follow up, but can tell you after nearly four years gluten-free -- my very bad back that I've had since early teen years has vanished -- back is stronger than every in my life

And yes, let the doctor lead, but do have your list of questions and tests you'd like at the ready -- I always do much better with a written list in my hand.

Yes, follow up celiac antibodies are important -- I had them at 3mo, 6mo, then annually after that.

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"That is great that your TSH improved -- you are not moving towards Hyper -- close to "1" is recommended as the best TSH.

Not sure about B12 -- just know it is good that it isn't low.

Bone scan is a great idea -- my celiac doc ordered for me when freshly diagnosed...haven't had a follow up, but can tell you after nearly four years gluten-free -- my very bad back that I've had since early teen years has vanished -- back is stronger than every in my life

And yes, let the doctor lead, but do have your list of questions and tests you'd like at the ready -- I always do much better with a written list in my hand.

Yes, follow up celiac antibodies are important -- I had them at 3mo, 6mo, then annually after that."

Thanks so much for the quick reply, Lisa

glad to hear if I would ask for a bone scan it doesn't sound out of the question. the ob/gyn only gave input about my low vitamin D level, and when I asked if anything else was low, I was told that a copy was sent to the GI so he can follow-up with the other results. I wouldn't have know about the low K without seeing the report, and now seeing the connection between D and K and bone density is concerning since I've always thought bone density shouldn't be a concern until my 50-60s

I definitely agree about having things written down. It helps me organize my thoughts, shows the doctor I'm taking things seriously, and helps me from getting tongue tied since my pulse starts racing when I enter any doctor's office

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

Bone scan -- usually folks don't get one until later -- my celiac doc recommended and it wasn't pretty -- I was 43 and had the bone density of a 80-90 year old -- good news is bone replaces itself completely in about 5 years -- looks like mine is -- am planning to repeat scan at about 6 years gluten-free -- should have the bones of a 20 year old by then

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Ok, so after I listen to what the doctor thinks...here are my questions. anything else I should add?

-Can I be retested with the complete celiac panel since I’ve been consuming a lot more gluten over this past month and was gluten light prior to the week before my initial appointment when I ate it at almost every meal? Can I also have the gene test for celiac ordered? (Celiac Disease HLA DQ Association Test to check for HLA-DQ2 and HLA-DQ8)

-Labcorp test #s CCP (165126) and GT (167082)

-Why do I have elevated DGP IgG if there is no other know cause to elevate theses antibodies other than celiac disease?

-Why am I deficient in Vitamin K if it is supposed to be rare? I have not taken antibiotics for awhile.

-Even though my calcium level is normal, because of my vitamin D and K deficiency, should I be getting a bone scan since deficiency in K and D is linked to lower bone mineral density?

-OB/GYN said to take 2000iu of Vitamin D per day. What else should I be taking for Vitamin K and low potassium?

-Why do I have high neurtophils and borderline low lymphs?

-Endoscopy with Biopsy and Colonoscopy Requests

-At least four samples, but the more the better since the damage can be patchy. At least three samples taken from the duodenum distal to the papilla, and at least one from the duodenal bulb. (I copied this info from the 2012 World Gastroenterology Organization Global Guidelines report...kind of looks like Greek to me )

-Thoughts on capsule endoscopy?

Tests requested:

-New celiac comprehensive panel

-Gene testing

-Bone Scan

-Endoscopy with Biopsy and Colonoscopy

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I had my follow-up today and am pretty happy with how everything went. First thing I asked about was my liver/gallbladder ultrasound results. GI doc said everything looked normal and there were no blocked bile ducts. My initial sitz marker x-ray showed a lot of stool, but then by day 4 it looked a lot better and I had passed out all the markers. He did comment on the high DGP igG result, but since the EMA and iga TTG were normal, he seemed to think it wasn't too bad, but because I still feel bloated, he was going to order the endoscopy and biopsy anyway. I said that I could not find any research for an elevated DGP igG level besides celiac, and he couldn't either but would look into it. anyone have a good answer?

However, then I mentioned that I had vitamin testing done and was deficient in Vitamin D and K. When I said Vitamin K, that really peaked his interest He said D deficiency was common, but that he hardly sees anyone with a K deficiency. He asked about antibiotics, and I said I hadn't take any in quite awhile. Here are causes that I found for this deficiency from University of Maryland Medical Center website:

To me it seems that the kind of doctor that would normally see K deficiency is a GI doctor. My multi-vitamin, Every Woman's One Daily by New Chapter Organics, has 1000 iu of Vitamin D, so I'm going to supplement with an additional 1000iu a day, but my vitamin also has 80mcg of Vitamin K which is listed as 100% of the daily value, but the GI doctor said that it would be safe to take 5mg a day of K.

He didn't seem to think I needed a bone scan, and said the gene test wasn't really necessary, so I didn't get those. However, I did ask to have another celiac panel drawn, and although he wanted to wait a few months, he did agree to that. I've been eating a lot more gluten over this past month, so I'll see if anything changes.

so the outcome...during the first week of March, i will be having an endoscopy with at least 4 biopsy samples though he is willing to take more, and I will be loading up on the gluten this weekend and getting my blood drawn again Monday. still moving forward!!

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

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Wow...very close to my blood at dx -- I had a few more borderline lows, but in general about the same. The good news when I compare yours to mine is your liver has great numbers. It is common for us to have elevated liver enzymes as the body is working overtime trying to clean things out.

Good Thyroid numbers -- did they run Free T3 or Thyroid Antibodies? Can't remember if that was on your list.

Are you supplementing B12? Nice strong number there.

so i realized that T3 was tested, but it was labeled Triiodothyronine,Free,Serum on my lab report and not T3, Free, which would have been much easier for me to understand the level was a 2.7 with a ref. range of 2.0-4.4.

so i've been doing some more thinking, while keeping in mind i haven't been diagnosed with anything yet. what if I am in the early stages of developing celiac, and it's only affecting portions of my duodenum? I am deficient in Vitamins D and K. Although Vitamins A and E are within the normal range, they're right in the middle. My iron serum is normal, and so is my ferritin, but my ferritin is 61 out of a 13-150 range, so I don't have really high ferritin stores. I've got good levels of folate and zinc, which seem to be absorbed throughout the intestinal tract, and my B12 is in the higher normal range, and when researching, I found out that it is absorbed in the ileum. Maybe it's only affected a portion of my duodenum?

so I've been eating a lot of gluten over this past month, so I'm surprised the DGP igG fell by 2 points, but at least I know it is truly positive. Am I correct in thinking that if I was non-celiac gluten intolerant or gluten sensitive, I wouldn't be producing any antibodies at all?

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so my initial diagnosis from my EGD this morning is GERD and a hiatal hernia. I really appreciate that my GI doctor seems to be listening...keeping my fingers crossed that this continues...to my questions and requests. He said normally he would take four samples, but we could take 6 or 8. I requested 8 He said that my intestinal mucosa looked normal besides one inflamed spot, but we would wait to see what the biopsies show.

I also asked him before the procedure if he was able to find another reason for an elevated DGP igG besides celiac, and he said he was not able. He must have done some checking, maybe he read the article I gave him at my last appointment , but he said that the high DGP igG result did seem very specific to celiac. That was great to hear him say! It was nice to also hear him say that there is a lot of ongoing research with celiac and food intolerances in general. He said that for a long time doctors have told patients that their symptoms were all in their heads, but now the medical world is trending towards that theses symptoms are not in patients' heads but instead the problems lie in their GI tract.

He also talked about gluten intolerance, but I did ask him that if I did have gluten intolerance vs. celiac, that shouldn't be raising my DGP igG antibodies, and he said that was correct.

My follow-up is April 11th. I did ask him if I could start eating gluten free, and he said that I can, so now I'll start making some permanent changes since my testing is complete!

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

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Ah well in waiting for your result too as we share done symptoms. I'm glad all went well though! Can I ask why your follow up is so far off? Does it take a month to check the biopsies? I thought it was about a week?

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Ah well in waiting for your result too as we share done symptoms. I'm glad all went well though! Can I ask why your follow up is so far off? Does it take a month to check the biopsies? I thought it was about a week?

*this was suppose to be a short response, but I got a little carried away. Thanks for listening!

I was told to make my appointment 3-4 weeks after my biopsies were taken. I was supposed to wait two weeks after my sitz marker and liver/gallbladder ultrasound, but I ended up waiting three since the GI was out of the office at my two week mark. I know the GI is at the location I've gone to on Thursday and Friday each week, I'm guessing at the hospital doing procedures one or two days a week since I was offered a Tuesday or Wednesday appointment for him to do my EGD, and then I'm guessing at their other office location the remaining days. A lot of guessing about his whereabouts here He won't be in the office three weeks after my EGD because, from hearing the nurses talking, his wife will be having a baby, so I'm thinking that's a good reason not to be in

I am planning on calling the office the first week of April to see if anyone will read the results to me, so I have more of an idea before my appointment. The last appointment I had gathered all my research, and realized that my Vitamin K deficiency could be linked to a blocked bile duct, so I thought maybe my ultrasound would show a blocked bile duct, but he said they looked perfect, so that didn't add up.

I get extreme anxiety in doctor's offices, which is why I put off going to them, and not knowing what he would say at the last appointment made it even worse. I'm thinking calling ahead would be a better choice this time When the nurse asked how I was doing the last time, I said well I feel really anxious, and I'm pretty sure my blood pressure is going to be really high. It was 170 over ?. I don't know the second number because all I heard was 170 and knew that was a personal record in a doctor's office. My previous record was 160 in the OB/GYN's office. I'm not looking to make records for my BP, but I think this illustrates how anxious I get The OB/GYN made me come back for a recheck, because continuous high blood pressure is a serious condition, so I bought a home BP checker and logged my results for them, and it is rarely above 125/80 at home. When I went for my recheck at the OB/GYN, it was high, but since I had my log, she decided I have white coat syndrome, which I completely agree! The last OB/GYN appointment was at 135, and that's a great number for me in a doctor's office. I think the whole method of taking blood pressure is contradictory. Let's constrict your arm, then constrict it more when we add pressure into the cuff, and ask you to relax, as we're constricting your arm some more

The GI asked me if I wanted something for anxiety, and I declined. I had told him I thought I had acid reflux but had never been diagnosed with it. I frequently get a bad taste in my mouth, and he offered something for reflux, but I asked him to wait until after the EGD because I wanted that to be checked out pre-meds, and I'm sure glad I did! Now I've been diagnosed with GERD, so I know that it's real. I had started reading Why Stomach Acid is Good for You a few weeks ago because I really do enjoy reading health books for fun, and someone on this forum had recommended it! I thought it would be an interesting read regardless if I had reflux or GERD or nothing but had stopped mid-way to prep with more celiac reading for my follow-up. Now I'm getting back to it, so I can gather the info I need to plan my gluten free and GERD eating plan.

Soapbox warning Medicine is a tricky thing. Sometimes you really need it, but I'm more about finding the underlying cause than popping a pill. It's just how I roll and my opinion...take it for what it's worth If I've exhausted my options, I will take something, and sometimes it really is truly necessary. When I first started having a rough time mentally and my GP gave me a prescription for Wellbutrin, I had exhausted my options and was still feeling terrible. I will absolutely say that helped level me out! I only took it for three months, and called up my GP to ask about how to go off it correctly. I will be taking Vitamin D and K supplements, the Ks should finally be arriving today, because I know that I truly need them based on my blood work. After taking Yaz and then switching to Gianvi, the generic of Yaz, and going on an emotional roller coaster, I am in no rush to put meds in my body if it is not something that is truly needed. I stopped the BC previously to starting Wellbutrin, and then didn't get a period for 5 months, so again meds were helpful in inducing one and now I'm just trying to get it regulated.

Whatever set me off on that downward emotional trend, be it my substantial weight loss through healthy diet and exercise, being switched to generic BC when my body was used to Yaz already or something else, I will never quite know, but I did need Wellbutrin at that time.

This post makes me look like a mess, but this has what has been happening for the past two years. Physically on the outside, I look like a happy, healthy 27 y/o female, but my mechanical workings on the inside are still not cooperating. Today is my last day of gluten, so that at my GI follow-up I can give him an honest assessment of what changes I have seen. I have been cleaning, and researching about which products to switch, so that I can give it my best shot. I have had trouble with perfectionism in the past, and know that trying to be absolutely perfect during this transition will make me upset if I fail, so I can only try to do my best each and every day. Tomorrow, March 10th is the start of my gluten-free journey. Here's to the start of trying to heal my body with the right foods for me

thanks for listening!

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Interests:Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)

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I have been absent IGA all of my life. The physicians used my anti-gliadin IGG as the metric to diagnose with. My IGG was elevated so we did a biopsy of my small intestine that confirmed my diagnosis. It is highly possible that you have celiac disease.

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I was gonna say I don't think you sound like a mess either! I'm just sorry to hear you've even through so much. I too suffer with anxiety, but unluckily not just in the doctors office . Please do keep us updated with how the diet is going! And of course when you receive your results. All the best

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You do not sound like a mess to me - you sound like a Celiac ready to take on her new healthier world ... keep it up

I was gonna say I don't think you sound like a mess either! I'm just sorry to hear you've even through so much. I too suffer with anxiety, but unluckily not just in the doctors office . Please do keep us updated with how the diet is going! And of course when you receive your results. All the best

Thanks for the encouraging words!! At this point, I'm waking up with a full 8 hours of sleep but feel exhausted. Only been gluten-free since Sunday. I think it's a combo of daylight savings time and gluten withdraw

I have been absent IGA all of my life. The physicians used my anti-gliadin IGG as the metric to diagnose with. My IGG was elevated so we did a biopsy of my small intestine that confirmed my diagnosis. It is highly possible that you have celiac disease.

eers03,

When you say IGA absent, does that mean you're IGA deficient? When you had the procedure done, did the doctor say visually everything looked fine, but then the biopsies showed damage? I am not IGA deficient, and my doctor said visually everything looked pretty good. Thanks!

I found this an interesting read regarding mild enteropathy called Mild Enteropathy Celiac Disease: A Wolf in Sheep's Clothing?

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I enjoyed this this thread. I am so glad that Positive was given what she needed to take in to the doctors. It struck me that the tests may only have been asked for because Positive had been here reading. The diagnosis happened because people here helped. It is really too bad that we have to fight doctors to get tested, but good we have a place to go for support!

Positive, you put in alot of work to type all of the information in. Sometimes I want help like in this thread, but typing everything is a deterrent to me. I like to type, but it takes time. I am glad you were able to get help.

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